Power Wands
Brain Tumor Letters
"From the Horse's Mouth"
These are some of the more interesting posting taken from the
Meningioma
e-mail group
for the first week in May 2001 No names are given to protect the
privacy
The opinions expressed are those of the writers and don't necessary
reflect the opinions of this web site.
Nothing quoted is meant to be taken as medical advice
Just meant to help you understand that no matter what treatment
you choose,
there may be after effects that your doctors don't tell you about
5-1-2001
" I can definitely sympathize with your plight. I had my 1 cm Meningioma
partially removed on 2/21/01. I was back to work in a month and
everyone thinks I am fine because I look good. I am even starting to
loose some of the weight I gained with the tumor. People have actually
asked me if they peeled my face to remove the tumor. No one understands
the psychological devastation that these tumors leave behind. "
5-1-2001
I can only say that I too suffered from a fairly severe depression about 3 months after surgery.
I was hospitalized for it-- and focal seizures.
The anti-depressants did not work for me-- they all just made me very aggitated. I
did find relief in Klonopin however. It brought me back to normalcy.
They gave it to me for possible focal seizures.
I now have to get off the Klonopin however, because the doctor's think it is making my liver toxic.
I don't think that every one has this problems with it however.
It really was a God send to me for a while. I'm hoping that once
I'm off the Klonapin that I will be o.k.
Actually right after surgery I was pretty good-- happy to be alive-- the
steroids make me euphoric. The problems started at 3 months post-op-- a
depression just settled-in even though I was trying to battle it and I could not shake it.
Also -- can you find a really good neuro psychiatrist?
I found one that really built up my confidence and made me feel great--
he also promised me that with time everything would get better. I Am getting back to normal--
it just has taken 18 months and I hope for more healing up until 2 years post- op.
I also had short term memory loss, balance problems, dizziness,-slowed thinking and a lot of fatigue.
I feel like I am getting back to normal however.
The NP had me do cross word puzzles. They really help with word retrieval.
They were hard at first-- I got the VERY EASY kind in book form at K-mart.
That way if you get really frustrated and need to find a word-- the answers are in the back!!!!!
5-2-2001
Because that's one big wallop of radiation all in one dose.
Radiation causes cancer.
People get cancer within the irradiated site, proving that the cancer comes from the radiation.
I'm scared of that.
5-2-2001
Thank you so much for your help with the issues of our recovery!
I am trying to obtain a referral to see a neuropsych. and will be calling again today.
( I am regaining some of my spunk back!).
I have heard of some good books, but the tapes may be better
since I don't seem able to 'sit and read' yet.
I have heard it could be three to five years for our basics to return!
And I would love the list of the Mild Trauma symptoms,
sometimes simply knowing you're within the 'norm' helps tremendously.
One of the reasons it's great even knowing about all of you guys.....I don't
feel so alone anymore and that is many areas of our battles!
5-2-2001
..." i made the decision to not have surgery.. i was scheduled ..and a week prior i canceled...
i live in upstate New York, and have a HMO,
and they did not want me to go out of network for treatment...
and the surgeon here who was supposed to be the best in this area,
had only done 10 surgeries on the brain stem.. and 6 of those patients have deficits...
all i knew was that i was not going to be the 7th..
i had sent my MRI off to doctor Williams, and got his opinion,
and then made an appointment with a radiologist in this area ,
armed with my report from doctor William's, who then referred me to the local veterans hospital here...
( the VA is the only hospital in my area that offers this type of fractionated radio surgery.. the government can afford the machine ).
IMRT STANDS FOR intensity modulated radiation therapy...
with IMRT, the intensity of the radiation can be changed during treatments
to spare surrounding normal tissue, and increase the dose to the tumor..
with this process there is cross firing of the beam, slice by slice of the tumor...
I am not in the medical field , just letting you know what my understanding of treatment was.."
5-2-2001
"My M. of 2cm was found over 5 1/2 years ago while looking for the cause of symptoms
not believed to have anything to do with the tumor.
Because I have not experienced any symptoms traceable to the M.,
I too am opting to just watch it with periodic MRI's
and have not seen any significant growth in that time.
My quality of life is exactly the same as it was before I found out about the M. lurking in my
brain except that I am educating myself, with the help of all of those on this list (thank you to all)
so that should the time come when I need to make a decision regarding treatment I will be in a position to do so.
I offer this to all to be "taken with a grain of salt" - it is certainly
not medical advice, but shortly after learning of my M. I read in a herbal
remedy book that some believe that tumors cannot grow in the presence of
parsley, so I have since that time included a parsley supplement in my diet.
Lack of growth in the M. may well be completely coincidental, but it isn't
very expensive and I know of no potential side effects, so I will continue
to take (and eat) my parsley, keep watch, educate myself, pray for all of us
who face this M(onster) and expect the best.
5-3-2001
"the problems i was having was due to some swelling
in my brain which occurred about 6 weeks after my treatments were over..
.the doctor said it was right on time... silly me..
I thought if I were going have problems, it would happen during treatment or shortly after...
things are getting better for me each and every day... and i thank you for your concern..
i wish you luck in making your decision, it is really tough, i saw 4
different doctors before i made my decision...
BUT I WAS THE ONE TO MAKE THE FINAL DECISION.. the one that was best for me.."
5-3-2001
Sx means surgery. I had surgery to remove my tumor on 9/8/1999.
I find that it is helpful to other list members if the person that is posting puts
where their tumor is or was( below their name )
and when they had surgery or if they are watching and waiting.
That way people that have had the same location of tumor can relate.
My neurosurgeon told me that it can take 18 months to two years for the brain to heal.
I noticed a big improvement in my word retrieval problems at about 16 months post- op. they are about gone now--
I did cross word puzzles- starting at about 10 months post -op. I did three or four a day--
just made my mind try to find the word( frustrating at first)-- it really helped. I still do three or four a day--
I like the fairly easy kind-- but hard enough to be a challenge.
I still have some spelling problems but they are getting better.
It is possible to find cross-word puzzle books at a local book store-- my neuropsychiatrist recommended them.
5-3-2001
" I found it interesting that you have joined our group with a pituitary adenoma.
I was diagnosed a year ago with a pituitary adenoma because I was still making milk two years
after weaning my youngest who is now four and a half. Surprise! When I went to have it removed in February
they found out that it was a Meningioma that was pressing on my pituitary.
Some of my symptoms disappeared while I was still in the hospital. I am now on watch and wait
for the remaining portion of my tumor that they could not remove. "
5-4-2001
"The radiation of GK( Gamma Knife ) is delivered through up to 201 holes in a helmet which covers the head. The radiation is focused on the tumor to provide the appropriate dose for the particular type of tumor. The radiation to the rest of the brain is very low due to the multiple sources of delivery (201 holes). The radiation can be shaped to the tumor by blocking some of the holes. I had GK on March l7, 2001. It is only used for small tumors. My tumor was touching the optic nerve and about .5mm of the nerve received a dose of radiation that could cause a deficit. But the chance of visual deficit was much less with GK than with surgery or FRS in my case."